The Gene Dilemma: Surgery thwarts genetic legacy of danger: Liz Hunt meets a woman who felt forced to have her healthy breasts and ovaries removed
Friday 07 January 1994
Mrs Watson was also keen to re-establish ties with her mother's family, many of whom she had not seen for almost 20 years. It proved an alarming experience. She found she belonged to a 'cancer family', with an inherited genetic pre-disposition to breast and ovarian forms of the disease.
Mrs Watson's mother died of breast cancer at the age of 43, and she knew her grandmother had developed it at 40 and died, aged 67, of suspected ovarian cancer. She was aware that her own risk was higher than other women's, but she had until then been unaware of the full extent of the disease in her mother's family. 'Suddenly I was surrounded by all these women with cancer. They would say: 'Oh so and so has just had her operation' or 'such and such has died'. They were quite matter of fact and nobody seemed to think it was unusual, or be aware of a family link,' she said.
Some painstaking detective work followed. Mrs Watson gathered medical records and death certificates, and wrote to relatives in Canada. She constructed a family tree that few women would wish to be part of. In addition to her mother and grandmother, she discovered that her great-grandmother had died of breast cancer; a great-aunt had died of ovarian cancer; two of her mother's cousins had been diagnosed in their forties; three second cousins aged between 38 and 50 had died of breast cancer; another had developed it at 36.
Mrs Watson took her findings to Dr Gareth Evans, a consultant in medical genetics at the Christie Hospital in Manchester. He could not tell her for certain whether she had inherited the gene responsible for breast and ovarian cancer, only that there was a 50:50 chance that she had done so. But if she was a carrier, her risk of developing breast cancer was as high as 90 per cent based on her family history.
With such a stark prognosis, she felt she had few choices open to her. Regular breast checks, mammograms and abdominal scans were not enough to ease the constant worry. Her GP suggested that she take part in a trial for the drug tamoxifen, which may reduce the risk of breast cancer, but when she heard there was no certainty that she would get the drug - some women in the trial take a placebo - she dismissed the idea. In April last year, aged 38, she had her healthy breasts removed and three months later underwent a full hysterectomy. 'Surgery was a drastic solution, but not as drastic as dying,' she said.
Wendy Watson is one of a handful of women in Britain who have opted for this radical solution after discovering their lethal genetic legacy. These women know that scientists are within months of finding the gene implicated in inherited forms of breast and ovarian cancer. Once that gene is found, a test to confirm its presence or absence will follow. A woman who does not carry the gene will be at no greater risk of breast and ovarian cancer than the rest of the female population - but women like Mrs Watson, who felt they could not afford to wait, have 'pre-empted the genetics'.
Most of the important gene discoveries to date have centred on rare inherited disorders for which there is no cure. Doctors and geneticists can offer little more than counselling and pre-natal diagnostic tests for those at risk, to tell them whether they have inherited or passed on the particular gene.
Despite the great advances in genetic knowledge over the last 10 years, few people have yet been forced to make difficult decisions about possibly life-saving treatment to protect against an inherited condition. But with the discovery of a gene test for women from high-risk families, facing such decisions would become a reality for hundreds of women.
Every year, there are 1,500 new cases of familial breast cancer, about 5 per cent of the total number. The dilemma for these women was first highlighted in the Independent in December 1992. Three sisters from Aberdeen were among the first to have disease- free breasts and ovaries removed because of an inherited risk of cancer. They, not surgeons, had suggested the surgery, and in the majority of cases so far this has proved to be the case. Doctors seem remarkably reluctant to raise the idea of preventive surgery with their patients. They fear it is unacceptable to most women, too mutilating and would lead to great psychological distress.
Dr Gwen Turner, of the family genetics clinic at St James' University Hospital, Leeds, says the idea of 'wholesale mastectomies' is 'an appalling proposition'. But Dr Evans disagrees - he says that for certain women it will be the right choice and they have a right to be aware of the option.
Wendy Watson has no doubt that surgery was the right solution for her, relieving her from a tremendous burden of fear. She said: 'I'd seen my mum die and there were all these relatives with breast cancer. I knew I could deal with the operation and with not having breasts, and I want other women to know that it is OK to have this done. It will save your life. It has certainly not altered mine one bit, except to enhance it.'
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